Being comfortable with comfort based care

 

"Do you feel relieved now you just need to focus on his comfort?"

I was asked this question by a dear friend when I brought Abdullah home after a long period of regular hospital visits and having come to the acceptance that he is in a period of neurological and physical deterioration. 

At the time I didn't know how to answer this.

If anything it made little sense to me that I would feel relieved …because the comfort based approach…the latter stage of palliative care...means he is closer to leaving this world. 

But it was an insightful question because on our palliative journey I have become so passionate about helping people appreciate the complexities of palliative care.

So I held onto this question, which was delivered with love and caring intent, and now feel it is so important to share what I am able to answer with as many people as possible. 

Comfort based care sounds so simple doesn't it?

Just keep them comfortable. 

In reality, keeping someone with such complex needs and such unpredictable deterioration comfortable is a daily challenge. 

But what is comfort?

I don't believe Abdullah has ever suffered with the type of material discomfort many of us go through life with. Where we struggle to connect with loved ones, always feel insufficient, always want more.

While we try to distract ourselves from uncomfortable feelings by picking up our phones, he is fully present and content. I believe he experiences a level of peace and fulfilling his purpose the rest of us must work tirelessly for. But on a physical level, obviously there is a type of worldly comfort that we are on a constant journey with.

Before I get into that I just want to ask... Do we need to be comfortable or do we just need to strive to be our best selves and fulfil our purpose in life with reflection, connection and gratitude every step of the way?

Maybe discomfort keeps us going, keeps us aware, keeps us connected and accepting of our limitations as human beings.

Now onto the medical part because there is so much to share here...

The first thing I have to acknowledge is that as a Muslim I believe that deep everlasting happiness and true absolute comfort for does not exist in this world. For me or for him. 

I believe Abdullah will have eternal comfort in Paradise and my heart is content with that because he is not mine to grip onto, he is a gift I love dearly but will have to return when the time comes, and I have no power over that.

This also helps with my own discomforts, going between the relief when we do find physical comfort for him but knowing that one day I will put my sweet boy down never to pick him up again. 

I have also learnt that although I am his mother, his primary carer and I try so much to read around, pay attention to him and discuss with the phenomenal professionals around us, sometimes even I don't know what is best for him. 

There are times when I really feel keeping him home is the best for him, but I have to force myself to accept that actually its not, actually he is so used to our local hospital, so used to beeping machines, the amazing nurses, doctors, playworkers and cleaners here, that he can be quite comfortable.

At other times just the smell of A and E sends him into a panic which can lead to complications only those who really know him are able to manage. To me, that is a reminder that the One who gifted him to us Loves him more than I ever could and knows what is best for him at all times. 

It is hard because all you want to do is hold onto your child, protect them and for them to have as little intervention as possible, however at times these interventions allow them to find comfort quicker and for us to keep them home. 

Also, anyone who has ever met a toddler will know that sometimes the simplest things make them inexplicably happy and distract them from what previously seemed like a disaster. His brain is complex but he is still a little boy who wants to play, feel love and attention and blow bubbles in my face! I still remember the first time he had hiccups and he just couldn't stop giggling!

When people make the effort to acknowledge him, talk to him, joke and play with him, he really feels that. We are blessed to have family, friends, neighbours and medical professionals who shower him with this love and affection.

He is at the maximum palliative dose for most of his medications now to control seizures, reduce his pain, calm his dystonia movements, relax his bowels and allow him to urinate. 

The next discussion will be morphine but I am hoping to delay that until he has his surgery so he can come home quicker on morphine instead of being distressed in ICU once he is awake. 

When a child has vomiting that is neurologically triggered, it can get to a point where there is very little you can do to control that. Abdullah is now on all the medications that can help, on the highest calories feed so it can run really slowly with two pumps steadily delivering water and specialist feed. But vomiting is a real issue and with vomiting comes aspiration pneumonia and with aspiration pneumonia comes breathing difficulties, strain on the heart, sore throat, urine infections, feeling very poorly….and hospital.  

He has had Fundoplication surgery where the top of the stomach is restricted but he wretched so much it came open. We have tried 2 Gastro-jejunal tubes from his stomach into his intestine so he is fed into the jejenum so he cannot vomit it up…but both tubes came misplaced due to his severe gut dystonia. So now we are awaiting jejunostomy surgery where a second tube will be put directly into the top of his small intestine. 

I didn't want him to go back into intensive care. But it is out of my hands now. I cannot keep him comfortable when he is vomiting and having repeat pneumonias. So we will try the surgery, expect the best from it and accept whatever the result is…at least we will know we have tried everything. 

Do I want to see him being put to sleep? Of course not. 

Do I want to let them cannulate him or cut into him?

Of course not.

But on our journey to being the most complete human beings we can be, confronting our wants, stepping beyond our comforts and instead trying to make decisions based on what is best, what is really needed in the bigger picture - that is the ultimate test. 

To do what needs to be done, not what we feel like doing at the time. 

To allow the emotions to come, but force ourselves to make informed decisions while accepting that the outcome is not in our hands. 

So to make him comfortable we will accept this major discomfort in the hope that after he can be home more, explore the world more, enjoy time with his family more and feel more comfort without regular vomiting and the cycle that creates. 

A hard decision. A different decision for each child and each parent because all the factors to take into account are so variable. 

Do I feel relieved now I just need to focus on his comfort? 

I feel relieved knowing there are still options available and we have so much support and expertise around us. 

I feel relieved knowing that the One who gifted him to me is the one who is ultimately going to take care of him. 

But it is not just comfort. 

It is precious family time. 

It is regular physio, movement, repositioning, cleaning, therapy. 

It is surrounding him with joy, love and peace.

It is crying and crying and crying.

Praying and praying and praying.

Trying to pay attention and really think, is this arm comfortable? Is this ankle stretched enough?

Such I stick that catheter into the top of his throat to try get some coughs and secretions out? 

Does he just want to get out of the house? Does he just want to go home?

With the medications and neurological deterioration come thick secretions in his lungs which require constant management, random skin conditions and irritations, thrush from preventative antibiotics, and feeling too dazed at times to be able to enjoy things he usually takes great pleasure in.

We try.

We will never be comfortable with our efforts but we keep trying. 

The blessings rain down in immeasurable amounts.

Our gratitude is never sufficient. 

Do I feel relieved? 

I feel honoured. I feel blessed.

I am so grateful for every moment together, every smile, every outpouring of love, joy and connection he brings. Abdullah has taught me more than I can have imagined about what it means to be human, to serve others and to love. He smiles through his discomforts and makes us realise that inner comfort is far more precious than anything we can 'fix' on the outside.

The human body and brain are so complex, so fascinating, and treasures like Abdullah just teach us how incredible and fragile our humanity is.

I don't think I'll ever feel comfortable in this world with or without my baby boy. But striving for his comfort is an honour I must give my all to.

And I am content with the eternal comfort we are striving towards. 

Thank you for reading.